The Consumers e-Health Alliance is calling on the major parties to revisit the $1 billion national electronic medical information-sharing system and actually deliver the promised benefits.

CeHA convenor Peter Brown says the launch of the $1 billion Personally Controlled Electronic Health Record (PCEHR) “needs to be seen positively for the opportunities it presents.”

But with emerging difficulties identified by medicos, consumers, the local health IT industry and the full range of State and Federal government agencies charged with implementation, CeHA believes it is now important to bring all parties together to tackle the issues.

There is no way an effective e-health system can be established without standardised infrastructure providing quality interchange and secure storage capabilities for people’s confidential medical information.

We need to build on the basic PCEHR infrastructure by incorporating the many practical systems operating across the currently siloed health sector, but this has to be done in a co-ordinated, connected way. Such an approach is increasingly being undertaken elsewhere around the globe.

The original National e-Health Strategy, agreed by all Commonwealth, State and Territory Health Ministers in December 2008, addressed the need for a national governing body with an independent chair and broad stakeholder representation to set priorities, direction and funding.

Crucially, the National e-Health Governing Board would be publicly accountable for ensuring the desired outcomes, with the support of a new National e-Health Entity tasked with managing the work program, overseeing standards development, a privacy and security framework, and systems compliance. it will also co-ordinate the implementation.

It is unfortunate that these governance arrangements were not established from the outset. Obviously the co-ordination and management of such an inherently complex system would be a critical factor in its successful implementation and ongoing operation. That would achieve good quality co-ordination and collaboration of all stakeholders. This accords with the recommendations of the Health Ministers Conference, December 2008.

Instead, responsibility for operating the network has been handed to the federal Department of Health and Ageing.

Clearly, this was not initially envisaged, and the Department is not designed for such a task and has no prior experience in an operation of this size and type. Department secretary Jane Halton correctly pointed out recently that the national e-Health program was larger than the Snowy Mountains scheme. This is true, but the responsibility for that construction job was not given to a Government department.

The PCEHR system is far, far bigger than can be managed in that way. Healthcare not only involves millions of individual citizens and their personal medical records, but many thousands of organisations – public, private, sole practitioners, and some 800,000 employees.

It involves a new communications paradigm on a grand scale that will be strange to nearly every participating consumer and clinician alike; based on an appropriate electronic networking infrastructure.

It needs to be accepted that such an e-health network can only be made workable by having the four key stakeholder groups – clinicians, consumers, the medical software industry and government agencies – present at the same table at all stages of its development and implementation. The operation needs to be melded into a suitable type of network. This complex situation cannot be validly compared with the banks, since a health service is quite different.

CeHA believes consumer organisations can play an important role in articulating and clarifying privacy and confidentiality concerns, advocating for higher quality patient outcomes and more efficient use of scarce health resources through new technologies, and the use of patient data for medical research endeavours. And importantly, greater engagement with the patients themselves.

Good governance can help to de-politicise one’s electronic health record, by focusing on long-term infrastructure that can evolve to meet the needs and aspirations of clinicians and consumers.

Right now, it appears consumers can’t see enough value in the PCEHR system to bother signing up, and the Australian Medical Association has expressed its concerns in strong terms. Those that have signed up within the DOHA recruitment campaign are very disappointed to find the record content does not meet their expectations.

If we reflect on the conclusions detailed in the original National E-Health Strategy, recommended by Deloitte, they now appear as “unfortunately prophetic”:

“Implementation of the four strategic work streams needs to be undertaken in a tightly co-ordinated and concurrent manner in order to effectively deliver the national e-Health work program. Each work stream is highly dependent upon the success of the others.

“Appropriate e-Health foundations, in the form of computing infrastructure and consistent information standards, rules and protocols, are crucial to effectively sharing information across geographic and health sector boundaries. In this regard e-Health foundations can be viewed as analogous to an ‘information highway’ – unless the system is connected up in some uniform and rules based way, then in formation cannot move across the network.

“Foundations alone will not be of any value unless consumers, care providers and health care managers have access to specific computing solutions or tools to enable them to view and share appropriate health information. E-Health solutions will be the tangible means by which users can benefit from the building of a connected information network.

“The implementation of national e-Health solutions will similarly be pointless unless consumers, care providers and health care managers are motivated to use these solutions. This is a two way relationship as the quality of the underlying e-Health solutions will also play a critical role in driving stakeholder take-up and support of the e-Health work program.

“Finally it is unlikely that any of this can be achieved unless supported by a governance regime which provides appropriate coordination, visibility and oversight of national E-Health work program activities and outcomes.”

CeHA hopes momentum can be restored to the e-health program by adopting the recommended collaborative approach and initially keeping things simple by building on what exists.

We hope to work with the new government, post-election, to establish a truly independent National E-Health Governing Council that brings all stakeholders together, and to which a new operational entity tasked with implementation and operational responsibilities reports.

In this way, we can restart work on providing an efficient, useful, secure and economically funded patient information-sharing network that delivers important, agreed and prioritised benefits for all participants, which all stakeholders enthusiastically support.

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The Australian Digital Health Agency in 2017 has been charged with drafting a new National Digital Health Strategy on behalf of the COAG Health Council. This new Strategy will supersede the National e-Health Strategy published in 2008. The Agency will also have the prime responsibility for implementing the Strategy. Submissions from the community were called by the Agency [...]